On December 13, 2024, Bapu Dindor arrived at the Valmiki temple in Sagwara by autorickshaw, accompanied by his wife. He was so weak that he could not climb the seven small steps to where the e-Mitr operator (a local agent authorised by the Rajasthan government to provide digital access to public services) sat with a laptop, registering people on the Rajasthan government's silicosis portal, organised by the Eklavya Bhil Mazdoor Sangathan, a collective of the Bhil tribal community in Sagwara dedicated to social causes such as linking people to welfare schemes and offering basic support.

The e-Mitr operator came down the steps so that Bapu could place his fingerprint on the machine. His family clung to the hope that this small act might secure some monetary relief for his suffering.

Under the Rajasthan Pneumoconiosis Policy 2019, certified silicosis patients are eligible for Rs 3 lakh in compensation plus a monthly pension for treatment, and a pension equivalent to persons with disability is provided. Further, another Rs 2 lakh is allocated for their family in the event of their death, along with a widow pension to the deceased’s wife.

That night, before his application for silicosis compensation could even be processed, Bapu's lungs gave their final protest against years of stone dust. His death certificate would join hundreds of others in Sagwara's growing archive of silicosis victims.

Bapu's story isn't an isolated incident. It represents countless stone carving workers from the Bhil community in Sagwara, whose lives have been systematically eroded by a preventable lung disease – silicosis, caused by inhaling silica dust. As temples continue to rise everywhere, the workers who carve their deities are left to contend with a legacy of exploitation, bureaucratic indifference and a dying hope for a life with dignity.

The temple industry, over the years, has seen a boom driven by religious fervour and political motivations. This has increased the demand for labourers in the stone-carving industry. For outsiders, the intricate stone carvings represent art, heritage and cultural legacy. But for the Bhil community of Sagwara, it’s a grim reality: an occupation, a primary source of income and the cause for the large imprint of silicosis.

With the construction of large temples everywhere, stone-carving workers are migrating much more than before, going from Rajasthan to Gujarat, Uttar Pradesh or even to other countries. Working conditions in this industry are nothing short of deplorable. Workers spend hours in enclosed spaces filled with fine dust, rarely provided with basic protection like masks or adequate ventilation. There is no social security, no provisions for wet drilling mechanisms to prevent occupational hazards.

In Sagwara, young Bhil community members are funnelled into this hazardous industry by systemic deprivation and familial survival instincts. Poor education, absence of local livelihood opportunities and chronic economic insecurity force households to prioritise immediate income over long-term well-being.

Contractors, aware of the desperation of families living on the edge of poverty, promise attractive wages. In Sagwara, where entry-level stone carvers can earn Rs 400 daily, unmatched by any other informal entry-level occupations, it is an opportunity hard to refuse. The industry capitalises on this vulnerability. For the workers, being able to afford cheap escapes like Pan Masala sachets, liquor and tobacco become a momentary escape from their harsh reality.

Migrating for a few months at a time, workers return with cash for their families and silica dust in their lungs.

"I started work when I was  16. My brother took me to Gujarat, where we worked 12-hour shifts. We were in awe of being of called maestri. It took my brother’s life ending for me to realise the harm we were doing to our bodies," recalls Rahul, a 26 year old from Sagwara who is now bedridden and unable to work due to his deteriorating health after years in the stone-carving industry, as he awaits approval for compensation under the state policy.

Pappu Dendor worked in the industry for over 16 years. He even worked in the Ayodhya Ram Mandir. He eventually had to stop working as breathing became almost impossible. Now he has switched to the construction sector, barely able to earn Rs 300 a day. His health is so bad that if he works for two or three days, he is too ill to work for the next couple of days, affecting the sustenance of his eight-member family. Understanding the consequences, he has asked his younger brother to stop working in the stone-carving industry. However, the reply that he receives is, ‘Will you feed us then?’

Labour contractors, themselves silicosis patients from the Bhil community in Sagwara, continue to recruit local youth for stone-carving works. The cycle perpetuates as economic necessity forces people to choose between a better immediate income with health consequences or a smaller and more irregular income that may not sustain a family.

A healthcare system that doesn’t care

Ramesh, who left the industry after 17 years, recalls how they used to attribute the deaths of their neighbours, who were stone-carving workers, to alcoholism – a convenient explanation that masked the true killer. Nobody in Sagwara gave significant attention to the number of workers who died until the Eklavya Bhil Mazdoor Sangathan intervened in 2022,, and neither did public health institutions.

The healthcare system, a supposed safety net for vulnerable people, is failing to provide adequate support to silicoses patients. Government hospitals have become arenas of indifference and clinical oversight.

A key challenge observed by workers who have been in the queue for months and years in the silicosis certification process is the clinical and radiological difficulty of distinguishing silicosis from tuberculosis, which leads to reduced suspicion and underdiagnosis.

Raju Ahari, once a stone carver in Somnath, Gujarat, now finds himself reliant on the Sagwara government hospital for treatment. Like him, many patients, after presenting their symptoms, are met with hasty consultations and dismissed with a cursory prescription for cough remedies. There is hardly any inquiry into their occupational exposure or the underlying causes of their deteriorating health.

Doctors here have a reputation for turning the sick away. “Aage javo yaa ghar pe javo (Either go to some other advanced private hospital or just go home)” is the refrain, says Naresh Ahari, 30, mimicking the physicians who dismissed his wheezing for years. Naresh finally found care more than 100 km away, in Himmatnagar, Gujarat. Naresh has been travelling to a private hospital in Himmatnagar, spending around Rs 2,000-3,000 monthly on medication, a crippling expense for someone unable to work since 2019. His wife works in four houses as a domestic worker to fund his treatment, apart from the loan he has taken from a microfinance institution. “We’re literally borrowing money to breathe,” Naresh remarked.

The journey from diagnosis to death is marked by institutional apathy and mounting financial burden for silicosis-affected families in Sagwara. The system is forcing people to seek expensive private healthcare. The families say medical expenses can go up to Rs 5 lakh for silicosis victims.

We can also observe that the awareness of silicosis and its severe complications with TB remains low among patients and providers, despite the high mortality associated with this comorbidity. Various studies have shown that patients with silico-tuberculosis face a compounded risk, resulting in higher mortality rates compared to those with either condition alone.

Bureaucrats and doctors alike allege that people say they have silicosis so that they can benefit from compensation, when in fact they have TB. Though some workers may have only TB, and no silicosis, the conclusion must come from scientific analysis, not by random comments from responsible stakeholders.

Women and children: The silent casualties

The toll of silicosis extends far beyond the individual worker. The crisis casts a long shadow over entire families, especially women and children, who bear the brunt of the industry’s neglect. In villages now referred to as 'widow villages', many are forced into domestic work. Despite being one of the lowest-paying jobs, domestic work allows them to care for their dependent husbands and minor children. Most of these women are in their 20s or 30s.

While states like Tamil Nadu have mandated that domestic workers must get a minimum of Rs 41 per hour or Rs 1,230 per month with one hour every day, and have one off day per week, the Rajasthan government has barely given a thought to their concerns. What we are observing in Sagwara is that, as two deeply vulnerable forms of labour intersect, the absence of state intervention leaves these women navigating insecurity on multiple fronts.

Working for about an hour in a house, these women earn anywhere between Rs 500 and Rs 700 a month from a single household, thereby denied the standard minimum wage of Rs 923 per month for 60 minutes a day of household work, even by the Rajasthan government’s lower scale. With the responsibilities at home, they are able to work only in two to four houses a day.

Govind Nanoma's family had received the Rs 3 lakh compensation mentioned in the state policy for silicosis, and is receiving the mandated pension. However, the compensation was quickly depleted by mounting medical expenses, remarked Kala, Govind’s wife. “With his worsening condition, I must be by his side constantly.”  This constant caregiving, coupled with the responsibility of two young children, including a toddler, leaves her in a precarious situation. The pension alone is insufficient, forcing Kala to undertake domestic work in a single home for a mere Rs 600 per month.

Sixty-five-year-old Tulsi Bagaria, sitting in her small house in the Bhil Basti, pointed to the photos of her husband, three sons and a son-in-law hung on the wall of her house. All of them were stone-carvers, and died after showing symptoms of silicosis. Her daughters are now engaged in domestic work, earning barely enough to keep hunger at bay. “We do often get some help from the community,” she says. “But how long can we survive with this meagre income?”

An overlooked part of this story is of children. Forced into labour after the death of their parent, they are denied education and the chance for a better future. They inherit not just grief but a legacy of poverty and lost opportunities. Financial exigencies force high dropout rates after Class 8 or 9, or sometimes even earlier.

Bagaria’s daughter-in-law Renuka Ahari said her two children, nine and ten years old, had been out of school for two years. Their inability to pay Rs 15,000 in outstanding fees after her husband Mukesh’s death has led to a deadlock. The private school the children were in refused to issue a transfer certificate, while the government school won't admit the children without it. It is only in this July, after receiving compensation of Rs 2 lakh under the Rajasthan Pneumoconiosis Policy, that they were able rejoin classes.

Policy, bureaucracy and the erosion of dignity

It was after years of relentless collective efforts that the Rajasthan government introduced the State Policy on Pneumoconiosis in 2019, acknowledging the right to life with dignity. It introduced compensation benefits like rehabilitation assistance worth Rs 3 lakh and Rs 1,500 monthly pension, assistance on death worth Rs 2 lakh, widow pension and benefits for children under the Palanhar scheme.

Observations from the past five years show that the policy implementation is highly flawed. The process of applying for and receiving compensation is mired in bureaucratic red tape that frustrates and delays justice for the afflicted. By design, the process of certification is like an endless loop instead of a simple line connecting a few dots. This bureaucratic maze delays and denies justice to critically ill patients and their families.

Pushpa Pagaria’s 24-year-old son Rajesh died after a prolonged battle with the disease. She saw her son’s application rejected and left languishing in an endless administrative loop. Families like hers, whose loved ones pass away before receiving certification, are left with nothing but grief and debt, denied both justice and the acknowledgement of their suffering.

State institutions are failing to deliver services democratically, let alone inform people of their fundamental entitlements. In Sagwara, people remained tragically unaware of both crucial policy benefits and the very nature of the disease plaguing them, until regional colleves like the Eklavya Bhil Mazdoor Sangathan intervened. But even then, the bureaucratic maze remains impenetrable for those who have already paid the ultimate price by their lives. The rehabilitation amount often is not enough to cover healthcare costs. The state policy says that the government will start special programmes for skill development for pneumoconiosis workers and their legal heirs, yet nobody in Sagwara had heard of any such programme.

When silicosis left her husband Dileep too frail to work, Kachhri Bai became a street vendor, selling biscuits and tea to keep the family afloat. They applied for compensation as his lungs failed, but now with Dileep gone, the Rs 5 lakh promised by the state remains elusive. As a meagre income from the shop and widow pension of Rs 1,150 can’t sustain the family, her 16-year-old daughter started working on construction sites, earning Rs 200 a day to support the mother and two other siblings.

“He built temples to gods,” Kachhri Bai’s voice broke, “but who will build a future for us?”

Vignesh M. is a researcher associated with the Aajeevika Bureau. Vasudev Dendor heads the Eklavya Bhil Mazdoor Sangathan in Sagwara.

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